Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

My experience with Epilepsy

Thu, 08/14/2014 - 03:59

Thought I would share my experience with epilepsy. I am a 30 year old Danish man living in Malta. I found this forum to the best out the ones I looked at. Anyway for several years I have been walking around with this like six sense feeling of being be able to see 5 to 10 seconds into the future. I would see conversations happen in front of me and then the conversation would be repeated again once I woke up of this strange feeling. I thought it was caused because I didn’t eat enough or drank too much coffee, or simply because I had super powers (had to be a bit optimistic) but other than that I really never thought of it as anything special. 

Anyway time went on; I split with my girlfriend as she started cheating on me and so I decided to start having fun again with friends again. We would go drinking one bottle after the other of Vodka mixed with Red Bull, Jack D etc. every weekend and when my friends went home I would go to the more hardcore places and do a few pills.

A year passed and I was seeing my ex on and off, so we decided to move back in with each other on the 1st of April 2010.

On the 9th of April 2012 it finally hit me. I was found unresponsive by my partner at 11.30 pm, had involuntary movements and foaming around my mouth. This was also followed by jerking movements in all 4 limbs. Tests were done such as EEG and MRI, but nothing was found. 

Though I must I admit now that the seizure was probably triggered by all the alcohol and drugs I took in the previous year, but you not exactly telling this to your doctor or girlfriend the first time, are you? One major drink which I believe triggered it was Red Bull and you will understand why further down.

I was discharged from the hospital on the 11th April and given epilim chrono 700 mg for the rest of my life.

On the 8th April 2013 it happens again. I had been out drinking with friends (no drugs as I stopped during that after the first seizure), but plenty of alcohol and especially vodka and red bull.

It started in the morning around 6 am while I was a sleep which lasted 10 minutes which included tongue biting, urinary incontinence, and confused, loud noises. I woke up shortly in the ambulance and then again at the hospital.

No specific tests were done, but my dosage of epilim chrono was raised to 1500 mg.

I had a few seizures after that, but my girlfriend had figured out how to manage them and I also got used to it. So if there was no bumping into anything with the head, legs etc. then we would skip the hospital.

11th August 2014 another big one hits me only 1 and half day after I’ve been out on a heavy night with friends. Again vodka and red bull was involved in our drinking.

My brother noticed something strange with me as I was hanging half-way out of the balcony – I live on 3rd floor. Luckily he managed to pull me in and put me down on my bed where I had movement in all four limbs and frothing from my mouth.

All the tests were done again at the hospital, but nothing special was found. I was told never to touch alcohol again and my dosage of pills was increased with a new drug called keppra.

If you noticed all 3 major events happens after a big night with vodka red bull! I never had any problems with driving vodka and coke or similar. I am 99% sure that red bull is the biggest cause of this, but in any case I have now decided to put all alcohol away and enjoy life in different  ways and one of my new goals is not to have any more seizures. So no more alcohol for me and hopefully it will also reduce the amount of medicine I have to take in the future.

Comments

I understand what you have

Submitted by Anonymous on Thu, 2014-08-14 - 13:11
I understand what you have posted I also know that a lot of doctors say NO MORE ALCOHOL. I have had many tell me the same thing. I have also ad many tell me a drink now and then doesn't hurt. I drink a beer or glass of wine now and then but I do not drink like I used to.I knew that drinking could cause problems since ot lowers the properties of medications and that can and does cause break thru seizures. If you look at red bull you will see that it has a lot of caffine in it. Like about 5 cups or more and ues that too counters your meds. So the combination can become a whicked cocktail. As for keppra welllllllll you can find a lot of posts about it not working and causing mood swings. There are some even calling kepp rage, It is true that there are side effects and one of them is mood changes. Most of those posts are from people who were the 5-8% that get the side effect. You will rarely hear or see other posts from the other 92-95% since it is working and doing what it was created for. Which was stopping or reducing the number of seizures with fewer side effects. I know this because I take it. I have had no problem using it. It has reduced the number of seizures I was having. It has also shortened the time in those seizures and the time to get back to normal. The same seizure usually lasted 2-5 minutes not lasts 2-8 seconds. The focus time (get back to normal) used to be 12-45 minutes is now 5-10 seconds. I will gladly take this medication and have seizures which most people would not even notice. I can be standing in a crowd or be on the phone and no one would know I had a seizure. I hope this helps 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.